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We already have hospice and it is not enough. I work full time and have two grade school children at home. I will not be able to continue to be a caregiver much longer. I know what my limits are and I will not allow ALS to destroy me or my children as well. We do what we have to do to...

This was actually one of my pals first symptoms. Had no idea it was serious. We used to make fun of him.:shock:

Tripete - where are you with your fvc? My Pals is at 10% at his last visit, but I question the accuracy. He too uses the trilogy only at night, but O2 24/7. I am pretty sure he was respiratory onset as well. He can also still use his arms and legs, although weakly, stiffly and no coordination.

So my pals has developed ascites. Which is basically abdominal swelling due to liver/kidney dysfunction. Hospice says the only treatment for this is diruetics, which would increase his frequency to urinate. His nurse said he would never sleep without a catheter. Any thoughts or suggestions...

Hey just wanted to update. Yesterday my pals had his last appointment with his neurologist. She assured him that hospice is managing his care well and that she would continue to be his neurologist, but that there was no need for a follow up appointment. He has continued to stay in denial...

Igelb The RT came out today and did that. Thank you for the suggestion. Hopefully he will have less discomfort.

My pals is having the same issue. In fact he won't wear his Trilogy right now because the air is making him so uncomfortable. His stomach is huge. However, he still is evidently swallowing air because the problem is not completely resolved even without the Trilogy. He is taking gas x in...

Hey - just wanted some feedback on blood pressure. Scott has had a rough few days. Mostly increase fatigue and sleeping. He is on o2 24 hours and with that his sats are around 94%. I checked his blood pressure yesterday which is typically high - and he takes medication for. To my surprise is was...

Tillie - this forum would not by the same without you. This has to be your calling. Thank you for your wisdom, insight, and personal experience.

Tillie - the box says 100 mg per 5ml.